I am kind of in a frustrating situation. I was told by my PCP in February that all my symptoms are pointing to something and in his opinion he thought possibly MS. So, had the MRIs done, one lesion found in my brain and none on my spine. Blood work was done to rule out Lupus, Lyme, etc. and all came back negative. Vitamin D and B12 are good as well.

The person who originally read my MRI said "lesion consistent with MS". I was sent to a neurologist and she said it's a nonspecific lesion and she cannot say when it appeared or why. Also, says this doesn't appear to be MS as I don't have any lesions. No other tests have been done. No nerve conduction test, no EMG, no LP. She basically, as of yesterday, told me it's "all in my head" and prescribed an anti-seizure medication. Originally she wanted me to take an antidepressant, but I refused as I am not depressed and have had a bad experience with those before when I was prescribed and didn't need them. (severe VitB deficiency that wasn't found until AFTER they put me on zoloft that I did not need!)

Now, I asked this neurologist about other tests and she chuckled and said it isn't necessary. Asked if I am a type A person/perfectionist and if I had any changes in environment and/or life lately. I REALLY felt like she was dismissive and not listening. She seems to be fixated on the ONE symptom of crawling feelings and not addressing all the rest. I talked about spasticity and she looked at me like she didn't believe me... asked if I was SURE it is spasms. Also, I am heavier so when I talked about my legs being stiff and hurting; some days can hardly walk, she just kind of dismissed it and said it was expected. Um... I've been heavier and had no leg/foot issues! (in process of losing weight.)

Once this all started very badly in February I thought about it and there have been a lot of symptoms for years that were small at first and have been increasing and seem to have all come to a head this winter. If I think about it all symptoms started when I was about 16/17... I'm now 33.

I can post a list of symptoms if anybody is interested or if it helps with helping me. Thanks!

I am thinking a second opinion is warranted, but this neurologist is supposed to be a MS Specialist so shouldn't she know best?

I pretty much ALWAYS answer "yes" when someone asks about a second opinion. In this case, I certainly would. What does your PCP think about referring you to another neurologist?

I have a call in and am hoping he will give me a referral for a 2nd opinion. Not happy with this neurologist. I'd love to hear it is definitely not MS and is something else... but I want to know what is happening and why, not just be given pills.

I would definitely, absolutely get a second opinion.

I'm really surprised that you saw a MS specialist and she didn't order an LP.

Regardless, it sounds like she was extremely rude and condescending, suggesting that it was all in your head. That is a red flag to find a new doctor. You need to have a working relationship with a doctor who treats you with respect and can be empathetic. I'm sorry you experienced this.

I would look for a 2nd opinion. Are you in a big city? Are there other neuros who specialize in MS that you could see? If you live in a small place do you have the resources to travel somewhere else for a second opinion?

Others here might have suggestions on how to find a neuro who isn't a MS specialist but competent enough to help you.

Just because this woman is a MS specialist doesn't mean she is the "end all, be all." I saw an MS specialist at one point who put someone else's films up to read instead of mine and couldn't get her act together.

They aren't God just because they specialize in MS. I went through several neuros (including some who specialized in MS) before I found one who was amazing.

Good luck with everything.

A 2nd opinion is absolutely warranted.

Good luck and let us know.

If the Neurologist will not give you a referral, get one from your PCP. If you don't feel good about the doctor, get rid of him and find someone who does llisten to you. There is nothing worse than being brushed off, when you have all those symptoms. Even if he is an MS specialist, there are others that may be the A student, not the D student! I wish you all the best. ginnie

Thanks everybody! I am happy to say my PCP called back within minutes and is working on the new referral for me. He's calling a few neurologists in the network to see who can get me in ASAP. He also isn't happy about the situation and feels an LP is definitely warranted. I hate needles so not something I am looking forward to, but really want answers.

I am glad to hear that I'm not being unreasonable about this. I guess I was thinking since this previous neuro was a MS Specialist I should just take what she says, but it didn't feel right to me. Everything else is ruled out so not sure why she is being this way. If it's something else, great. But, she wasn't giving me other options other than crazy either.

She said sometimes we have a little issue that we let our minds blow out of proportion and think it's more than it is. I am not at all Type A or one to get worked up and blow things up. I'm very laid back and if anything let things slide too often... which is why I've had symptoms for years and didn't do anything until it became unbearable and messed with my daily life.

I'm just very happy I have a great PCP.


And to answer a few questions, I live in a very rural area and any neurologist is at least a 3 hour drive. This last one was closest. The hospital that my PCP is looking at now is farther away (5 hours), but we'll make it work and take that trip because both my husband and I feel it's needed. Actually, if not for my husband I probably would have just decided to let this go once again as I'm not really that assertive. Where as hubby is being a pit bull with this and not willing to let it go at all without a definite answer.

i couldn't have said it better than natalie.
besides credentials, drs should listen, look, examine and validate.
you knew in your gut she wasn't right so listen to that little voice.

and, good for your dh. it's good to take someone with you to appts for a 2nd set of ears. start to keep a sx (symptom) journal with dates. it might help the next dr. and, get copies of your mri's & reports to take with you. was your mri with & without contrast?

sometimes with dx'ing MS you might have to wait several months to repeat the mri's to check for changes. there is something called the McDonald Criteria that drs refer to when dx'ing MS. you might look for it and check it out.

your pcp sounds like a gem. please let us know how things are going.

Agree, with the above posters.

And NurseNancy, is correct, it could take time, and repeated MRI's to get a DX.

LP's can show lesions, and if you are having leg troubles, having that spinal tap, sure wouldn't hurt to have all the i's dotted and t's crossed.

So, sorry, you didn't get the compassion that you need